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October 16, 2017     (Sara)

Over the last month, there have been some really great times followed by some really not-so-great times. And visa versa. Not just with this little family but pretty much the whole world, I suppose. I know that we live on this incredible sphere and we shouldn’t be surprised with cycles but man sometimes taking the good with the bad can be difficult. There are plenty of events that have proven life is tragic that I could write about this evening but I don’t think I have the expertise to do so. What I can write about though…is me.

I find it fascinating when I enter a deep and meaningful conversation with a friend, who is going through some intense struggle, with some sort of wisdom and insight…then end up coming out the other end of the conversation bawling because I needed to hear my exact words. Communication can be so serendipitous and altering that way. I found myself saying things like “when you feel anxious, try to change you mind” and “you have to forgive yourself for feeling this way…”. Those are just examples of the words that really helped me. But turns out, I had a whole conversation of really good advice. Who knew? But how can I not support myself the same way I do a friend? I used to be so in touch with my own body, mind, and spirit but have felt so disconnected for so many months now. I know this is typical. I know that when a family goes through trauma like ours has, that this sort of disconnect and anxiety can be expected. But I still don’t know why it takes me tears with a friend to listen to myself. 

I truly have the best support system and while my days have been a bit more heavy than light, I feel supported constantly. I feel supported by my friends, parents, husband, family, nurses, and even the doctors in our lives. Oh, and Pelei, our dog. She is my buddy, and gives me kisses more so now than ever in the past. I make that statement about support because I never want anyone to think I feel alone. I don’t. In my darkest hours, it is YOU that gets me through them. When I feel anxious or fearful, I think of all the people praying that I don’t feel anxious and fearful. You truly are the best people on this Earth. I’m fine. I really am. I told Megs and Gen that I’m waiting for this level of anxiety to feel normal. At this point it still feels uncomfortable but I don’t see it diminishing anytime soon…I guess I’ll still wait.  

As for Maya. She just came off of a 9 day bout of constipation. She had her quarterly spinal tap with intrathecal Methotrexate one week ago and since then has been a bit of a challenge. She went into the procedure with grace and woke up a….well a dragon. Poor Nurse Lauren got a front row seat to Maya’s Fury and at that moment completely understood why we call her Maya The dragon. When Maya is constipated, her behavior is extremely challenging. I don’t blame her. When I haven’t pooped for even just a day, I can be pretty grumpy. Her legs hurt quite a bit more than usual this month and I’m not sure if that is the extra activity that she has been doing at school or the chemo. I DO know that the chemo does not help Maya poop and that is a challenge I cannot wait to eradicate from our lives. The poor girl had more bowel care (laxatives and stimulants) than ever and she still just couldn’t….let it go. She would have (let it go) if there wasn’t the complete understanding and trauma of what her little butt hole would feel like during and after. Even as an adult it is hard to talk yourself into crapping out a rock and I just feel awful that I have to coach my 4 year old into doing exactly that. But she did it as I helped her.  And she’s okay now. We are all okay now.

Maya’s ANC is 2100. Of course this is too high, but she hasn’t been one to chill in the sweet spot. We will increase her oral methotrexate this week in hopes it will deplete some of her immunity without crashing her bone marrow. We’ll check labs again in one week. It isn’t ideal but at least she will get to return to school this week (after clearing all that bowel care she gave her). And even through the fits of dragon screams, tears, mean words, and sleepless nights…she sometimes seems very happy. At least I think. I’m always so impressed how she bounces back from weeks like these and turns into the happy-go-lucky kid I remember.

For Scott and I, the stress ebbs and flows. I admit if feels like it flows more than ebbs but we have each other and we take wins when we can. And we do find time to enjoy. I had a wonderful birthday weekend (at the end of September) with an outdoor movie night with the kids and an AMAZING Janet Jackson concert with my two best girls, Megan and Genessa. The next weekend, Scott and I flew to LA to root for our DODGERS in the playoffs. We flew into Burbank and 24 hours later flew home. It was short and so sweet to take home a WIN of our boys in blue. I have always been a fan of “life’s simple pleasures” but perhaps never as intensely as recently. 

We might have several more months of treatment but one day we will get to the 7th inning stretch. The break in the game when we’ll get to stand up, sing out, and root root root for the home team (us!). And we will then move on to the next inning. And then we will win. It is right around the corner…I can just feel it. I have to trust it is there.

Take care, stay safe, eat your veggies, and smile.
Love is Life. 

I have recently run into several people, whether it be at work, the store, the hair salon, or even a local fundraiser for a fellow community cancer family, that have asked about Maya. Some times the days go by and I don’t realize how long it has been since I have written an update…and I know I should. For both you and for me. Mostly because I know people want to know how The Dragon has been and what she might be up to. And also for me because I know it helps me to cope with all this. I have, yet again, found my self silent lately because I really just don’t have words to write. Certainly no beautiful and inspiring words.

But…it has been long enough that I will offer an update…or at least some words.

Nothing terrible has happened and we have, some how, stayed out of the PICU (knock on wood). The kids have been “grounded” in a sense to the home for a couple of weeks now and everyone is antsy but we carry on with our day to day relying on our amazing retired parents that make time to hang out with our wild kids so that I can continue to work a few days a week. We also rely on the invaluable friends that are family who will drop anything and everything for us if we have a last minute meeting or some random thing that pops up….if they are feeling 100%, of course. While we have missed (or will miss) some fun things, we made it to my best friend’s birthday dinner (Happy Birthday Megan!) and some other fun things. Come what may, we have managed our lives the best we can. And in my opinion, I find that remarkable.

So, as you may know, Maya (AKA FireFlash) spent a week at school before we had to pull her out. She then went back for two days after finding out her ANC was 900. The following week (last week) her ANC was 442. Out of school once again. It feels daunting to keep up with all this so to write an update with every “to and fro”…I just can’t.

Last week, when her ANC was 442, the protocol would have been to hold her chemo. We had just come off of a chemo hold so the doc was hesitant to hold again. I feel that I need to remind us all that the more chemo holds…the more chance of relapse. So we discussed a slightly lower dose of 6MP, the continuance of Methotrexate, allopurinol, and Decadron…and off we left the clinic. The doctor continues with the opinion that she is still highly sensitive to the 6mp and that this is not looking like relapse…and I hold on to that little nugget of information as tight as scales hold on to a fish.

A while back I asked the doc if we should just surrender to weekly lab checks but Jake (DrZ) was optimistic that we could likely manage with bi-weekly checks….hah, we all know how things change. Back to the clinic we went today (a week later). Maya, Lincoln and I made it to the clinic (both kids in medical masks and a cape because Maya can’t do anything that Linc doesn’t do…or wear…or say…or eat…or lick…or love). We got labs drawn and Maya got to show off her Strong and Calm skills as the 3/4 inch 22 gage needle gets stabbed into her chest with blood coming out of a noodle. Lincoln wasn’t scared. He watched with slight concern but held the trust that she was fine. At the end, he requested to help invert the tubes of warm blood for Denise to take to the lab. It was a nice outing. 

Usually Denise will call with the labs but I unusually got a text from Dr.Z that started out with “Maya is going to give me a heart attack”. It then went on to tell me how amazing her labs were perfect aside from her ANC of….2100. He said “we will discuss”. Oh my…this child. Oscillating between neutropenia and too high. I can’t keep up. We all expected her numbers to have depleted further since once we started the 6MP again she dropped to 442…then we kept going with the meds. Is it that she just got off a week of Decadron (the steroid that can artificially inflate her ANC)? Is it another virus? Is it some other random reason? We just don’t know. But yeah…heart attack….or at least some hypertension.

We will have a conversation with Dr. Z soon. Usually we would have spoken by this evening but I didn’t want to text him and since her ANC is high enough, I have chosen to return my kids to school with out asking. School and “why the hell does my kid keep doing this?” is really my only questions for him at this point. He did mentioned we will continue with the same dose of chemo but I thought I would give him a night to think about a plan. I honestly have no idea and reality is, he might not either.

What I do know is that he is saving our kid’s life….and way too many other kids’ lives too. It breaks my heat to know how many families are going through this nightmare. And for some, their nightmare never ends. Scott and I were able to go to the Shoe Tree Brewery’s fundraiser for Iliana Avila’s family yesterday. Iliana (she is 8) was recently diagnosed with a brain tumor and the prognosis and treatment sound (and feel) way too familiar to my best friend April’s diagnosis…and prognosis. I don’t think it is a glioblastoma but something that has her on her wish trip as soon as possible and her family at her side soaking in every moment and memory possible. So when thinking about our situation, it feels okay. We are okay and life isn’t all that bad. My dark hours in the night aren’t as dark as Iliana’s moma’s…at least I don’t imagine they are. But maybe I selfishly don’t want to image her’s. We have our children at home. And while Maya might not be the healthiest, our children get to live a life of a child. They are learning, eating, drawing, singing, dancing, laughing, and loving. And for that, I am grateful. So amazingly grateful.      

I am also grateful for My Love. More and more with each day. He is incredibly busy at work…and killin’ it on little sleep and more stress than I wish on an enemy. He makes me proud and while we are in our “thirty somethings”…and maybe closer to forty than thirty…he makes me love him deeper than ever.  I get butterflies thinking about the first days we met and how exciting it is to fall in love. Then I get this amazing sense of rapture as I experience the idea of how he is mine. And I am his. This life hasn’t been the easiest (and honestly, I don’t think any life is) but he makes me trust it is possible to find the easiness. He makes believe that we will find our beach again and those days of laughing while drinking coffee with no cares in the world still exist for us. I trust they do. And I trust we will get our Maya the Dragon there too.

Thank you again for the continued support. We don’t have an exact plan for now but my plan…is to let my kids go to school tomorrow. And hopefully the next day. And the next. And next.

Love is Life.
s

August 29th, 2017     (Scott)

We’re sorry for the delay in communication. Many of you know there were some surprises with labs on Monday, and while we try to avoid suspense, we just didn’t have the energy to write a post after that kind of day.

Maya is feeling fine, and most of her cell counts are very strong. The shock on Monday was that Maya’s ANC was 180. If anything, we were concerned that her ANC would be too high– in fact, just two weeks earlier it was 4500. It’s hard to say what the reasons are for such a swing, except that there are multiple reasons and we’ll probably never figure out exactly what they are.

Maya’s HGB was 11.1 and her platelets were almost 300 (both very strong). That would indicate (in my opinion) that we’re not overdoing the 6mp. Other common factors that would affect ANC include exposure to viruses– Linco and Maya both had recenly re-entered the world of preschool pathogens, so it seems likely this would be part of the answer.

With ANC under 200, we immediately removed both kids from the Child Development Center and have quickly re-established our ‘bubble’ at home. Aside from the worry and uncertainty with Maya’s numbers, keeping both kids out of school is the hardest thing to deal with. They both were embracing some real normalcy and were doing so great– making friends and having wonderful new adventures. The scheduling of childcare is a challenge too, but our A-team is always ready with Bapa Pat riding to the rescue at a moment’s notice… the kids are never mad about getting to spend the day with Bapa.

Maya is off chemo for at least a week as we wait for her ANC to recover. Since her other counts were good, it’s anybody’s guess what things will look like next Tuesday. Sara and I are thankful for many things– no need for transfusion and no sign of relapse are very high on the list.

We spent this past weekend visiting Nona in Sacramento. It was wonderful to see Nona Jeannie– the kids are absolutely crazy for her. We enjoyed great food and hospitality, and we took advantage of Nona’s beautiful backyard pool as well. On Saturday evening we were guests at the annual block party– more great food and some new friends too (see pics). Maya and Linco made fast friends with Marley and Maya (7 year old twins). In fact, their first play-date happened the same night, and the second one happened the next day! Marley, Maya, Evelyn, and Mike have a gorgeous home with a great pool and play area in the back– our kids thoroughly enjoyed every bit of the fun and friendship. Thank you all for your amazing hospitality– it was very nice getting to know you, and we hope to see you again soon. 

We will work toward stability and recovery this week and keep you all updated on Maya’s progress. With a little luck we will have the kids back in school in a couple weeks. Thank you all for your support and love.

August 22nd, 2017    (Scott)

As of this week Maya is back to school, and the only way to really accurately describe her excitement level is, F#%$ING STOKED!

Maya has always loved school– she started before she was two years old in Miss Sally’s class, and the songs, routines, and relationships quickly became part of her identity. We’ve made many difficult changes during Maya’s treatment, and taking her out of school just as she turned 3 and joined the ‘Rockets’ was among the hardest– it’s just that important to her, so Sara and I are glad to be able to add that component back into her world.

Over the weekend, Maya got her first taste of back-to-school shopping which was off-the-charts awesome. She was allowed to pick out quite a few things on her own which led to some interesting results. She left the house excited about seeing the special “room at the store where they let you get naked” (dressing room), and she returned with an alter ego (see picture below)… that’s Fireflash… well actually it’s Fireflash Josephine Morrison. Anyway, Fireflash rocked that first day back at school like a superhero should… sparkly gold shoes and all.

Returning both kids to school is also unmeasureably stressful for us. The kids are handling everything fine– the normal sniffles (no fevers) are coming and going as they adapt to a more biologically diverse environment. For us, I think, it’s hard to break away from the safety and the routine of the home/bubble. As with any of the transitions we’ve faced along the way, we will adjust here too, and we will handle what challenges come our way together.

Maya’s most recent trip to the infusion center was just about a week ago. She hadn’t been for more than a month before that, so we prayed for ‘no surprises,’ just strong numbers. And for the most part that’s what we got– good counts for platelets and hemoglobin, clean liver function too. The one worry was that her ANC was higher than we’d like for Maintenance– around 4500 (we’re aiming at closer to 1000). There are a number of reasons this could have been high– fighting the new bugs that little brother brought home from school could do it, or the current dose of 6mp might be too low. Most likely it’s a combination of things, and I have to remind myself often that as we try to regulate and monitor her numbers, Maya is growing and changing before our eyes. She’s adding height and weight, her activity levels are increasing, and she’s going more and more places as we continue to expand outside the bubble. So, we are patient, and we take adjustments slowly– we’ll go back in a week for more labs and consider tinkering with dosages then. For now, we value the strength and energy our little dragon uses to re-engage at school, and we revel in the ease with which she adapts back to that environment.

Maya’s treatment end date remains at April 21, 2018– a date so near and yet so far. We have started to turn daydreams of celebrations into plans, so please keep your ears open for information on our ‘Aloha Chemo’ party (that’s the ‘goodbye’ aloha). We look forward to honoring Maya’s strength and the power of an exceptional community that has supported our little family through it all.
Good health and peace! Thank you.

August 3, 2017     (Sara)

As a child, I thought there was something magical about swinging. It didn’t really matter what kind of swing. The school yard type swing set where best friends are born. A porch swing, with or with out cushions. A boat style swing that could fit 6 small children (or two adults). Or even just a piece of wood dangling from a rope attached to an old tree. Swinging has always been one of my favorite things to do. The summer I lived on Kauai, I found a swing set about 100 yards away from Kalapaki Bay. I think that is what my heaven is like.

It wasn’t until I was in my degree to become a dietitian when I found out that swinging is actually not magic. It’s science. Swinging acts like magic because it helps to stimulate the vestibular system. I remember a fascinating discussion on how actions like swinging actually bring “balance” into our bodies and help us not only feel more relaxed and soothed…it can make us happy. I want to be happy. I want everyone to be happy.